Coping With Survival

By: E. Loren Buhle, Jr. Ph.D.
Copyright, 1994

The Introduction

This information is directed
to those affected by cancer. It is for you, a member of your family, or someone
very close to you. Many people, including physicians, equate a diagnosis of
cancer with a certain death sentence. While this may have been true twenty-five
years ago, it simply is not true today. While cancer is a life-threatening illness,
it is no longer necessarily or imminently fatal. Survival rates for many cancers
have risen dramatically in the last twenty-five years.

Today, many patients go
into remission, a state where there is either no evidence or symptoms of disease.
After five years of remission, many patients are considered cured. The chances
are excellent that they will continue to live, grow old and die in much the
same way as they would before their diagnosis. Others will live normally for
many more years in little to no discomfort, their illness remaining dormant
or controlled through treatment. Year after year, the number of long-term survivors
continues to increase.

It is difficult not to
focus on dying. It is not unusual to contemplate death when you are confronted
with a disease that may rob you of your life. Yet, the reality is that many
people will be living for some time, and survival brings with it a whole new
set of concerns that cannot be treated by chemotherapy, radiation or surgery.

The purpose of this message
is to examine the stresses shared by those with a serious illness. I shall look
at some of the emotions and issues commonly arising during each phase of serious
illness, from before diagnosis, through life after recovery.

No two people with cancer
are exactly alike, nor are their experiences identical. Still, people in similar
experiences and feelings. Although each person must deal with illness in an
individual way, it can sometimes be useful to see how others have managed to
cope with their circumstances. One man explained that he and his family view
the experiences of other people as "an emotional road map which helps us avoid
'one-way' thinking and 'dead end' arguments." A woman with cancer finds that
by talking with others who are coping with a similar illness, she can "sort
everything out and put things back into some kind of perspective. It helps me
feel less like a victim, more in control . . . not so alone."

The goal of this message
is to serve as a guide to help you explore your own issues and emotions. Some
of the material presented may be irrelevant to you and your circumstances. My
hope is that by seeing how others deal with their disease, you may feel less
alone and can begin to to find your own ways of coping with survival.

The Diagnosis

Sometimes, the results of tests
taken during a routine checkup will show that a person who is feeling fine does,
in fact, have a major illness. Usually, people suspect the truth by the time the
diagnosis is confirmed. Their physician may seem overly concerned or may have
already advised them of the possible existence of a serious disorder.

Still, when most people
hear the words cancer, they respond with shock, fear, and disbelief.
They react openly, vehemently refuting all facts, and may even become angry
with their physician. Some listen attentively, perhaps nodding as if in aggreement,
while they are secretly rejecting everything that's being said. Others hear
words that just don't sink in. Some simply accept what they hear.

These initial responses
are all normal. The mind has a capacity to absorb only as much information as
we are ready to accept. These reactions protect us from the overwhelming anxiety
which could result from the the full impact of such devastating news. They serve
as natural control valves to allow us to continue to function as we slowly absorb
the information about our illness and its treatment. This is why denial of the
event can serve a healthy purpose, for a time.

The human spirit is remarkably
resilient, adjusting to even seemingly unbearable situations, and most people,
each in his or her own time, gradually come to accept the reality of cancer.

The period immediately
following the diagnosis is one of intense inner confusion and conflict. It is
important to remember to consider your own needs. You have the right to digest
information and sort through your emotions at your own pace, as well as determine
when you are ready to talk and how much you are ready to discuss. This may be
at a different pace than other family members.

A frequent question to
arise is whether or not to tell other people. Sometimes, people are reluctant
to tell anyone and may even withdraw from family and friends at this time. They
may be too embarrassed, feel that those closest to them might not be able to
cope with the situation, may not want to burden others, or think that their
illness is something they have to handle by themselves.

As you consider the question
of sharing the diagnosis, it might be helpful to remember that dealing with
an illness of this nature can be more frightening and lonely than anything most
people will ever have to experience. There are too many times when, regardless
of your support, you will feel totally without ally or comfort. There is no
need to increase these moments by trying to "go it" alone.

The majority of people
find, in the long run, it is best to be honest with close friends and relatives.
Trying to conceal the diagnosis from those who are closest to you often turns
out to be exhausting and futile. They can sense when something is troubling you
even before they know the facts, and they usually find out sooner or later that
you have a serious illness.

Confiding in family and
friends gives them the opportunity to offer their support and also encourages
an open exchange of feelings which, under other circumstances, none of you might
have ever expressed.

If you have limited family,
the burden might seem lighter when you share the diagnosis with a few close
friends. You may find that one or two will be unable to deal with your illness,
but you may also find that the least likely of companions has a yet untapped
reservoir of loyalty, strength and compassion.

Some people find themselves
at a time in life when they are without close family or friends when illness
strikes. If this is true for you, you might think about joining a mutual support
group with others who are coping with a similar disease. These groups can be
an excellent source of solace, understanding, and companionship for those who
find themselves totally alone. Even people with good support may find these
groups very helpful. The topic of support groups will be discussed later.

Should you inform your
employer about your illness? Honesty is probably your best policy. Your
initial treatment may require hospitalization and subsequent outpatient treatments,
thus spending several hours or more away from your work.

We are often very close
to the people we work with every day. They will know something is wrong. Some
may even have to assume additional responsibility in your absence. You may wish
to share the diagnosis with some of your co-workers. As with family and friends,
a few will make themselves scarce, while others may surprise you with a wealth
of strength and support.

Most parents will do almost
anything to protect their children from pain. From an adult perspective, there
are few things more painful than dealing with a life-threatening illness. However,
most people who have tried to shield their children from knowing that a parent
is seriously ill often regret later they did not tell the truth.

Children, especially young
children, tend to see themselves as both the center and the cause of their own
little universe. They know when something is wrong with their world, and usually
take on a tremendous amount of responsibility for it, believing it is their
fault. They will feel the stress within the family and without the knowledge
of what is wrong, have more anxiety than if told. Indeed their fantasies may
portray outcome more lurid than any realistic outcomes!

The parent who is ill may
want to be the one to tell the children, or if it is more comfortable, the other
parent or a trusted relative or friend can talk about it. The person who tells
them should have enough information to answer their questions honestly and directly.
Your approach should certainly not be overly pessimistic, but children should
also not be given too much of a sense of false hope.

While you may be able to
tell older children the name and a brief description of the illness, the explanation
should be kept as simple as possible for younger children.

"I've been sick
alot lately, haven't I? The doctors think they can make me well if I go to the
hospital. It is far away so Mommy's going to keep me company. Aunt Marie will
take care of you while we are gone. We're sorry we can't be with you, but we
still love you very much, and Mommy will call you whenever she can."

It is usually helpful to
say the word cancer, as they will probably hear it used by others. It
can also give them a word to be mad at, if they are angry. While a much weaker
statment, you might try the tact:

"Mommy is very
sick. We think she is going to be okay, but her treatments sometimes make her
grouchy and sad. It's not your fault, but she can't spend as much time with
you as she wants to right now. It is hard on all of us and we all have to try
to be a little bit patient with her."

Children have amazing resources
and capabilities when they understand a situation. Perhaps by being truthful
with them, we can help to lessen some of the confusion they might experience.

Remember: children
want reassurance they did not cause the illness. They need to feel secure that
someone will be there to care for them.

Sometimes the family members
or close friends are the first to hear the diagnosis and must then decide whether
to tell the patient. If you find yourself in this position, you are already aware
this can be a complex and agonizing decision. In most instances, people with cancer
agree they are better off knowing the whole truth about their illness.

We all have important decisions
and choices to make during the course of our lifetime and, for many, these choices
are never clearer than when they are confronted by circumstances of potentially
shortening our expected life span. Cancer has an enormous ablity to bring focus to both the life of the patient and the lives of those around the patient. What
really is important in life? Yesterday's frustrations fade away when
we consider our mortality. While thinking in terms of a future bounded by so
many weeks, months or years to live, most patients feel they have a right to
know about the diagnosis and treatment options so they can decide how the "live"
the remainder of their lives.

In addition, as survivorship
rates continue to increase, not telling a patient may require the family and
friends to keep their "secret" for many years. Realistically, the procedures
involved in diagnosing and treating cancer often make it extremely difficult
to shield people from the nature of their illness for very long.

Most people eventually
figure out the truth, and if they have not been given adequate information about
the diagnosis, they can imagine their illness is much more severe and less treatable
than it actually is. They may feel no one is being honest with them because
there is no hope and they are going to die soon. Some patients even think their
family and friends cannot accept the reality of their illness, so they must
"spare" the very people who are trying to "protect" them.

Dealing honestly with illness
eliminates the need for false pretenses, often opening up a rewarding exchange
of comfort and support patients and families alike. One woman whose aunt died
recently from complications related to leukemia shared an experience common
to families:

"My cousins decided
not to tell my aunt that she had leukemia. They felt it was best for her, but
it actually made it very difficult for everyone, including my aunt. Our family
was always very close, but we were never into reminiscing or expressing our
feelings for one another. My aunt was the oldest, someone with whom we shared
a lifetime of experiences, and suddenly is seemed as if so much would be left
unsaid."

"My cousins did eventually
talk with her about the severity of her illness and, as it turned out, she
suspected it all along. Once everything was out in the open, it became a lot
easier for everyone."

When we confide in the
significant adults and children in our lives, we take a vital step in dealing
with the reality of illness. The period immediately after diagnosis is characterized
by many emotions. Sharing these feelings with each other -- our fear and sorrow
as well as our hope and joy-- helps us establish those mutual bonds of strength
and understanding to support us through the many challenges ahead.

Coping together lessens
the burden and loneliness of a serious illness. Still, even though we may be part
of the same family or have been friends for years, we all may not be able to discuss
our feelings at exactly the same moment. Cancer strikes each person in a powerful
-- yet individual -- way. While we should encourage the open expression of thoughts
and emotions, no one should feel obliged to talk before he or she is ready to
talk.

This stressful period of
adjustment will perhaps be a little easier if you remember it is a difficult
time for everyone. We can help and support each other by trying to remain sensitive
to each person's emotional needs and capabilities.

At the same time, however,
the people around you also have cares and concerns. You might try saying, "I
know you are concerned and we definitely do have to talk, but I'm not ready
yet." This type of response validates the other person's need, confirms a future
conversation, and still allows you additional time.

You may notice, as the
diagnosis becomes more real for you, your original feeling of shock and disbelief
gradually turn into anger and depression. You might have trouble sleeping, eating
and concentrating. You may feel anxious and irritable, possibly even persecuted,
wondering: "Why does it have to be me?" This is a natural response during
this period.

The frustrating aspects
of a life-threatening illness provide for the release of emotions, and you may
find yourself overreacting to simple misunderstandings or lashing out unexpectedly
at family members and friends. Actually, it's fairly common at this stage to
resent people who are well. You may even be using them to focus your anger and
confusion.

Perhaps you assume that
because people are close to you, they will accept and endure your wrath. Perhaps
they will, but don't be surprised if they lash right back at you, expressing
their own anger and frustration.

Family members and friends
are also going through a lot now. They may be afraid of losing you. They may
be apprehensive about taking over additional responsibilities. And they, too,
feel powerless. So while you may occasionally need to unleash your pent-up emotions,
it's also important to recognize others may need the same release.

This period is truly one
of adjustment and acceptance. Arguments, and even emotional outbursts, can be
a valuable part of this process if we use them to strengthen our communication
with each other. For example, after things settle down, you might try explaining
your anger and frustration with the people involved. Sharing your feelings in
this way might initiate the type of dialogue through which everyone can begin
to express their feelings in a more honest and direct manner.

Obviously, this is a difficult
time for you, the family member or friend, as you try to maintain a balance between
fulfilling your own needs and those of the person who is sick.

Family members and friends
are often ready to discuss their feelings before the person who is ill. While
you can express willingness and desire to have a conversation, it is important
to let the person with cancer decide when you will actually sit down and talk.
It can be frustrating, but sometimes you have no choice but to wait until the
other person is able to discuss his or her feelings.

In the meantime, he or
she might be directing a lot of anger your way. Remembering that you are the
target, rather than the cause, of this hostilities might help you to be a patient
during these outbursts of frustration and resentment.

Family members and friends
may try to combat despondency by insisting that "everything will be all right."
But at the moment, everything is "not all right" and by denying this reality,
you may actually abort the person's attempts to express his or her feelings.
Instead of trying to lift someone's spirit with false cheer, you might try sharing
some of your own emotions. Knowing that you have some of the same fears and
anxieties about the future may make it easier for the other person to express
his or her feelings.

Everyone wants to be a
loving family member or friend, but people are often not quite sure what "to
do" or how "to act" around those with a life-threatening illness. Perhaps the
best thing for you "to do" is to be yourself. Once the treatment begins, there
will be a number of opportunities to offer your assistance and support.

Some family members and
friends, perhaps even all of them, may deny the reality of cancer. Or, while they
may accept it, may refuse to discuss it. We all know people who have never learned
to communicate their feelings and, in all probability, they are not going to do
a complete turnabout now. Still, if you as a patient need to express your feelings
and sort out your emotions, it is time to turn to one of the several support services
listed here. A social worker or pyschologist may be helpful to get you started.

"I've been in remission
for about a year now. I think my doctor and I did a great job. We make a good
team but, I have to admit, it took us a while to get it together."

"I'm one of those patients
who likes to know everything and, in the beginning, I just assumed he would
tell me all there was to know. He did talk to me but, for some reason, didn't
always give me all the pieces to the puzzle. Finally, I just started asking
a lot of more questions, and he started giving me a lot more answers."

"I couldn't believe it.
There I was waiting for him to tell me more, and there he was waiting for me
to let him know how much more to tell."

Although your regular doctor
may continue to be your personal physician, most often, he or she will termporarily
turn the reins over to an oncologist or hematologist for active treatment. In
many instances, a whole treatment team will be assigned to your case -- which
might include nurses, radiation technicians, a surgeon, a social worker and
a psychologist or psychiatrist -- but it is the oncologist or hematologist who
is responsible for your health.

In all probability, once
your physician has given you a confirmed diagnosis, it will be up to you to
initiate further discussions about your illness. It's true, your doctor will
look for clues from you, but he or she is not a mind reader. You have to let
your physician know how much you want to know.

Some people want to know
everything right away. Some ask a few questions at a time, digest the answers,
and then come back with more questions. Some never ask anything and, in this
case, a family member or close friend should speak with the doctor about the
extent and future outlook of the patient's disease.

In any event, regardless
of when and how you do it, it's important to let your physician know that you
are ready to talk more about your illness and its treatment.

When most people a receive
a diagnosis of cancer, they are completely shocked and stunned. It is only natural,
then, to be confused about what happened during your first meeting with your doctor.

As a patient, you have
the right to know as much as you want to about your illness, and you have the
right to ask questions until you understand the answers. We know you want to
be a "good" patient or "cooperative" family member, but in the long run, both
you and your doctor will benefit if you are well-informed and assertive.

It is important to ask
your physician about everything you don't remember or understand, even if it
means reviewing everything he or she told you all over again. Don't be afraid
to "appear stupid" or to "take up too much of your doctor's valuable time."
Yes, your physician is busy, but this is your body. This is your life!

It might help to prepare
a list of questions and, prior to your appointment, alert your doctor or his
or her receptionist that you will need extra time. It is also a good idea to
take notes, use a tape recorder, or bring a clear-thinking relative or friend
rather than trying to commit the information to your own memory.

In addition to asking specific
questions about the diagnosis and treatment, it is also perfectly acceptable
to ask your physician to recommend other doctors if you wish to get a second
opinion.

In this age of consumerism,
physicians have become increasingly aware of the importance of recognizing and
responding to the feelings of people with life-threatening illnesses. It is easier
to fight cancer when the doctor and patient work as a team. A physician depends
upon the feedback of his or her patient, from the diagnosis through completion
of treatment, and it is helpful if the two develop a relationship based on mutual
trust and open communication.

There are some physicians,
however, who have never learned to speak comfortably with seriously ill patients
or the patient's supporters. Some of these doctors may seem abrupt and aloof,
when they are actually very dedicated, caring, and extremely well qualified
people.

If you are having trouble
communicating with your physician, it is only fair to let your doctor know that
you would like to see someone else. Don't be embarrassed. Your physician should
want what is best for you, and is probably also aware that the proper relationship
was not established. A decision to change physicians should be based on a realistic
assessment of your condition rather than an impossible quest to find someone
who will magically alleviate all your fears by promising a miracle cure.

When you consider the question
of switching doctors, it is important to recognize that a doctor who advises
that your prognosis is poor but still uses all available means to treat your
illness and to keep you comfortable and functioning for as long as possible is not forsaking you.

Also, if your family physician
has not yet sent you to a specialist or is one of the few who still believe
"nothing can be done", ask for a referral, contact your local chapter of the
American Cancer Society, local chapter of the Leukemia Society, or the information
in Oncolink for more information regarding treatment in your area.

"When I think
about treatment, I think mostly about the changes. Chemotherapy changed the
way I looked, the way I felt, and the way I thought. I perceived and reacted
to people and situations very differently than I normally would, sometimes very
differently that I had just an hour or two earlier. And treatment didn't just
affect me personally. It affected every area of my life." "I was in the hospital
for a long time so my family life, my career, and my social activities were
all completely disrupted. As I started feeling better, all I could think about
was going home and continuing life 'as usual'."

"I was totally unprepared
to find that carrying on 'as usual' would not be nearly as easy as I anticipated.
Life was really not the same now as it was before I got sick. I'm living
with cancernow . . ."

There are many types of cancer
and each patient's treatment program is determined by the individual form and
course taken by his or her illness. Generally, treatment begins immediately. It
is usually aggressive and involves chemotherapy, radiation, surgery, or any combination
of these three methods.

Some people can be treated
on an outpatient basis, but most are hospitalized for one or more extended periods
of intensive treatment, followed by a period of maintenance therapy during which
they are required to make regular visits to their physician's office or clinic.

Between the time you receive
the diagnosis and the completion of your treatment, you will probably hear about
one or more unproven methods of treating cancer. Too often, patients are afraid
to ask their physician about unorthodox treatment methods. However, this topic
is really too important to your well-being to prevent you from discussing it with
your doctor or health care professional. If you are uncomfortable about bringing
up the subject, you might try saying: "You know, I've been hearing alot about
such-and-such treatment for my cancer. Can you tell me more about it, and why
it isn't accepted by most medical doctors? Why do some think it works and other
think it doesn't?"

Using this approach, you
have not attacked the treatment you are getting or the professionals administering
it. You have only asked for information. Check the theory behind any treatment
plan with your physician or another medical specialist in the field of cancer
before agreeing to any treatment.

There are other thing
that may help you with your treatment, such as dietary changes, exercise, stress-reduction
techniques, mental or spiritual imagery, etc. For more information, your physician
may be of some help. This area will be covered in some detail on OncoLink shortly
(i.e. stay tuned!).

Despite the advances made
in medical science during the last twenty years, side effects remain an unavoidable
consequence of most treatment programs. They include a broad range of physicial
and emotional reactions, running the gamut from mild to severe. Some side effects
appear during or immediately following treatment and some may not manifest until
years after chemotherapy or radiation have been completed.

Reactions, and their intensity,
can vary considerably from treatment program to treatment program, as well as
from individual to individual. For example, one patient being treated for Hodgkin's
disease couldn't remember a day when he felt "normal", while another patient
undergoing similar treatment for a comparable period said: "I think I've had
a pretty easy time of it."

The best source of information
about side effects is your doctor. Your doctor is the most knowledgeable about
your particular case, and, therefore, the most qualified to discuss your treatment
program. You should not hestitate to talk to with your physician about any questions
or fears you may have regarding your treatment and possible reactions to it. Please
don't forget: your physician can't help you with your side-effects if you
don't report the symptoms.

Other health care professionals,
such as a nurse or technician responsible for administering your treatment,
can also supply you with assistance and information. You may also wish to read
some literature describing the side effects associated with your treatment program.
Material of this nature is usually available from your doctor's office, treatment
center, and here on Oncolink.

Many people also find that
support groups provide an excellent forum for the exchange of experiences and
information about side effects and how to cope with them.

There are too many individual
treatment programs, and consequently too many variations of side effects, to include
everything in this article. This article will discuss the most common side effects
(specific reactions will be covered elsewhere on Oncolink).

The most common side effects
include nausea and vomiting, hair loss, changes in your skin and mucus membranes,
and mood swings. These reactions can be unpleasant, but they are usually temporary.
They are most exaggerated during periods of aggressive treatment and subside
completely, or come and go, during maintenance therapy. In certain instances,
the intensity of these side effects can be controlled by modifications in treatment
and/or diet, as well as by medications prescribed by your physician.

While some chemotherapy
drugs limit hair loss, many patients undergoing aggressive treatment still lose
a good portion or all of their hair. Regrowth normally begins after initial
therapy has been completed, and the hair may come back even thicker than it
was originally! No one looks forward to the prospect of losing his or her hair,
but if this possibility is particularly disturbing to you, it might help if
you have your hair cut short and practice wearing scarves, or a hairpiece or
wig, before your hair actually begins to fall out. Many patients find this type
of preparation makes it a little easier to adjust to this change in appearance.
Your chemotherapy nurse can be quite helpful with questions about your hair.

There is no doubt that
treatment affects the central nervous system, making you experience emotional
highs and lows. Mood swings are generally not severe enough to require medication,
and most patients report that prior knowledge and understanding of this side
effect helps them to weather these emotional ups and downs. You may want to
tell family members and friends that your moods are "subject to change," to
prevent possible conflicts and misunderstanding with other people. In some cases,
short term medication may be indicated if depression or anxiety becomes too
severe for too long.

Fatigue, too, is a common
complaint among patients. Most people learn to combat fatigue by maintaining
a balanced diet, setting priorities, and adjusting their daily schedule to ensure
they get adequate rest until their normal energy level returns.

Both men and women may
experience some sexual difficulties during and after treatment. These difficulties
can include impotence, lack of sexual desire, and sterility or infertility.
Women may develop menstrual irregularities as well as other symptoms of early
menopause such as hot flashes, insomnia, increased vaginall dryness and increased
irritability.

Hormone replacement therapy
may reverse the process of early menopause or alleviate its symptoms. Replacing
hormones lost during treatment also reduces the possibility of heart disease
and osteoporosis which might otherwise result from premature menopause.

Patients should be aware
that certain treatments may result in permanent sterility and should discuss
this with their physician. Couples falling into this category might wish to
consider adoption. Men should discuss the possibility of sperm banking with
their doctor. There is currently no reported case of ovum cryopreservation --
freezing and storing a women's eggs -- but there have been some successes with
preserving pre-treatment sperm samples for artificial insemination at a later
date. Consult your physician.

It is not unusual for
people to feel sicker during treatment than they did when they were originally
diagnosed. It is little wonder, at times, why patients have trouble maintaining
a positive outlook and sense of self-esteem.

It is hard to be optimistic
about your recovery or to feel good about yourself when, among other things,
you are nausated and all your hair has fallen out. It can be especially demoralizing
if, after you have returned home, you are still having a lot of days when you
don't feel well. Yet, as woman with leukemia said, "I don't have any solid proof
of this but, when I make an effort to be optimistic, I seem to feel better and
have an easier time coping with treatment."

It is not easy to remain
optimistic, particularly on those days when you are feeling absolutely awful,
but it is important. It may take some practice. You might have to remind yourself
again and again that you are getting better and that, as your treatment continues,
you will have many more good days than you do bad days. You might also find
that planning special activities for those days when you feel well helps to
make the good days better and gives you something to look forward to on those
days when you are feeling under the weather.

Probably the best way
to enhance your self image is to participate in those activities that help you
recapture a sense of mastery and control over your mind and body.

You might wish to look
into techniques such as relaxation or meditation methods designed to focus the
mind, alleviate tension and anxiety, and reduce stress. Some people take dancing
lessons or exercise classes to improve their concentration or coordination.
Other achieve a renewed sense of wholeness and well-being by participating in
activities such as judo, karate, and yoga. Still others find that playing a
favorite sport or music helps restore their self-confidence and sense of achievement.

Catching up on some long
overdue reading, taking a course, or learning a hobby have opened up new areas
of interest and growth for many patients. One woman told us that her poetry
class "lit a creative fire within me that I never even knew existed," while
a man who just started painting said it gave him "a profound experience of peace
and contentment."

Outpatient treatment is
designed to enable people to live as normally and productively as possible. Even
though you have some difficult adjustments to make, you really can become an active
participant in your own life

As a note of caution, try
not to confuse "active" with "overactive. Respect you need for rest and
relaxation. Exhaustion only weakens our physical and emotional defenses, and
fatigue can trigger unnecessary bouts of depression and despair.

Perhaps this is also a
good place to mention that people who have a serious illness often have a desire
to "put their house in order." Some mistake this reaction as a sign of giving
up, but more often, it is simply attending to details of life. From time to
time, we all have to review insurance, update wills, clean out closets, and
drawers. It can actually be an emotional relief to tie up loose ends and clear
out clutter. It makes us feel constructive, accomplished, and allows us to move
on -- unencumbered -- into new areas of exploration and growth.

It is important to remember,
while you have cancer, that you are not your illness. Your illness
is something that has happened to you and, although treatment may temporarily
affect your appearance and capabilities, you are not what you look like or
what you can do.

It is a special and rewarding
challenge for us all, but particularly for those faced with a life-threatening
illness, to discover and remain focused on whom we really are. Time and treatment may return you to good health, but in the long run, it will
be the appreciation you have for your own real self, as well as the support
of the people who love you, which will restore your sense of serenity and well
being.

When cancer strikes one
person in a relationship, it strikes the other as well. Just as each person must
deal with heartrendering problems according to his or her own nature, each couple
must learn to cope with the stresses of treatment in ways compatible to their
relationship. Often couples are successful in handling many of these stresses
-- finances, transportation, revolving responsibilities -- only to have their
relationship seriously jeopardized by sexual and communication problems.

Illness can invade even
the most private aspect of your partnership, and it is not unusual for couples
to have questions and anxieties about sex during treatment. People are often concerned
about whether cancer is contagious and whether any sexual dysfunctions stemming
from treatment will be permanent. So, we would like to address these concerns.

Cancer is not contagious. Cancer cannot be give to -- or caught from -- anybody, under any circumstances,
and this includes sexual activities.

Any loss of sexual interest
or ability resulting from treatment is usually temporary, and normal sexual
functioning usually returns after therapy has been completed.

If you have concerns, have
a frank and thorough conversation with your physician. He or she should be able
to answer all your qustions and alleviate any of your remaining fears. Again,
we know that many people are embarrassed to talk about sex, but it is too important
to let modesty stand in the way of finding solutions.

There are other problems
that can affect the sexual aspect, and consequently the overall health of relationships.
Communication is key to working through these problems. Being honest about your
thoughts and feelings is sometimes very difficult, but talking about the issue
is the way to get through the problem.

Some side effects can
make it difficult to feel good about your appearance. If you don't feel attractive,
you might fear rejection and avoid physical contact with your mate. Or, you might
be afraid that your partner will be unfaithful, especially if your treatment has
affected your sexual performance.

Try to remember who you
really are and the reasons your mate finds you appealing. If you are having
trouble getting back in touch with some of your special qualities, you might
consider counseling as a way of regaining your perspective.

You might be able to view
your fears in a future light if, for a moment, you put yourself in your partner's
place. Discuss the doubts you have about yourself as well as those involving
the security of your relationship with your spouse. You might be surprised to
learn your partner is hesitant about initiating physical contact because he
or she is afraid of appearing overeager or insensitive. So, it may be up to
you to let your partner know when you are ready to engage in sexual intercourse,
or desire other forms of physical affection such as hugging, caressing or kissing.

As a person who is well,
treatment is no less difficult for you to live through than the patient. He or
she may be experiencing a lot of self-doubt and anxiety caused by side effects,
or possibly even by a mistaken idea about your true feelings. Your partner may
actually withdraw from you at the time when, more than ever, he or she needs your
support.

If possible, talk with
your spouse about your conflicting feelings so that, together, you can prevent
this cycle of misunderstanding from damaging your relationship. Remember that
expressions of affection such as touching, kissing and holding are very important
to the person who is sick. Reaching out shows your continued interest in your
partner as an attractive and physically desireable person. Actions speak to
your unconditional acceptance, support and love.

Some couples find the strength
and support to overcome the difficulties created by illness. However, cancer
can seriously strain a relationship that is already stressed by other problems
and, in these instances, counseling might help reopen channels of communication.

A life-threatening illness
is devastating to every family it touches. Hospitalization as well as periods
of outpatient treatment disrupt normal routines and patterns of living. This is
true whether the patient in the household is a spouse, a child, or an elderly
patient.

Family members may be
required to take on duties and responsibilities of the patient during the treatment
phase. Flexibility and adaptability are very helpful. A man or woman used to sharing
financial and household responsibilities might not have to be the only breadwinner
and full-time homemaker. A teenager might have to assume major household duties
while a younger child might be asked to take on additional duties.

When family members are
forced to "wear too many hats" at one time, it undermines their physical and
emotional health as individuals and consequently, undermines the strength of
the family as a unit. As a family, it is important to minimize potential confusion
and keep patterns of living and interaction -- within the family as well as
with the outside world -- as close to normal as possible. This helps everyone
cope with day-to-day stress during treatment and, in the long run, makes it
easier to resume functioning as a unit during periods of extended remission
or permanent control.

Establishing an order
of priorites and responsibilities helps to maintain a sense of normalcy within
the family structure. Family members can be assigned tasks falling within the
realm of their ordinary roles, making it easier to keep usual patterns of behavior
and interaction intact. Duties can be reallocated to members who can comfortably
assume more responsibility, shifting some of the weight from those who are carrying
too much of a load.

Members of the family,
including the patient, can review current responsibilities and activities and
determine together those things which are most important to the family as a
unit as well as to each individual member. In some instances, you might want
to have someone who is more objective, such as another relative or friend, help
you sort out the tasks which are necessary from those which can be left undone.
You might find you can temporarily relax housekeeping standards or prepare simpler
meals.

You might consider getting
outside help. Licensed practical nurses can assist with the patient. County
and private agencies as well as outreach programs within the community might
be able to help with transportation, shopping, cooking, and other housekeeping
tasks. You might wish to hire someone to perform outside chores, such as cutting
the grass or weeding the garden. The cost of professional services has to be
weighed against the physical and emotional price paid by the family, as well
as by the patient, when members try to do everything by themselves.

As a family member, you
naturally share in the responsibility to provide the patient with the best care
possible. It is also important to remember you have rights and needs too! You
have the right, as well as the obligation, to be sure that your own needs are
met and to maintain your own health and sense of well-being. In addition, you
have the responsibility to cooperate with other healthy members of the family
so that their needs can be met as well. This may sound selfish to some, but when
the needs of those within the family are satisfied, the patient usually receives
higher quality care and more loving attention.

You have the right and
obligation to discriminate as best you can between those needs which are
immediate and genuine and those which are not -- whether they are yours, those
of a family member who is well, or those of the patient. Responding to only
the genuine needs of the moment helps alleviate confusion and stress during
the treatment phase.

You have the right to get
outside help in caring for the patient when you need it. The patient may or
may not agree, but even if he or she resists, you can and should feel comfortable
about obtaining outside assistance when necessary. Try to not feel guilty about
participating in outside interests and activities. If you maintain contact with
the rest of the world, it will be easier to continue caring for the patient
without any unnecessary feelings of anger or resentment.

A life-threatening illness
attacks not only a person's life, but also his or her self-concept as a fully
functioning human being. Feelings of dependency and helplessness are common to
those which are seriously ill. As soon as the person feels physicallly able, he
or she should be encouraged to participate in a full range of family activities
and responsibilities, including emptying the garbage and feeding the cat.

Even if the hospitalized
and bedridden, a patient can still have input into decisions regarding treatment
options, family finances, and the children's schooling. Keep the patient informed.
You can share your activities, your dreams, your goals. A patient who is involved
with others is more likely not to succumb to the feelings of abandonment which
often accompany a serious illness.

Children can have a great
deal of difficulty when a parent has cancer. During periods of treatment, children
are often required to cope with situations beyond their maturity and understanding.
They may be asked to make exceptions for the moods of other people, to behave
especially well, or to perform extra chores. Sometimes children resent a loss
of time and attention. They may begin behaving themselves contrary to their usual
nature or patterns. Normally quiet and compliant children may become openly rebellious.
Those who are ordinarily gregarious may suddenly become timid and shy. Some can
become preoccupied with thoughts of death, particularly there own or that of their
parents.

Children do need discipline
and guidance and, especially during periods of upheaval, the reassurance and
support of a loving adult. Perhaps a favorite relative or family friend can
take them on a special day trips, help with their homework, and even attend
an occasional little league game. This extra time and attention can be a beneficial
supplement to your effors to provide security and support.

When there is no one else
in your home to provide encouragement, treatment can be a difficult time. It isn't
easy, but regardless of your living situation, there are times when we all have
to find our own motivation for "getting up in the morning". As is the case with
other people with cancer, your life consisted of pleasures and responsibilities
before you got sick and, as soon as you are able, you should resume as many of
your normal activities as possible.

Some people view survivorship
as an opportunity to reassess their lives and make a new start. One man, previously
a mortician, decided he would be happier helping people who were still alive
and switched his career to hospital administration. A remarkable eighty-year-old
woman, treated on and off for leukemia for the past twelve years, began helping
out in the kitchen of the local senior citizens' center. Today, she supervises
the kitchen staff, organizes special trips and says, "I meet so many people
and feel so involved with life now. I'm busy and happy and, best of all, I don't
have too much time to worry about myself."

People often find, even
during periods of outpatient treatment, that by helping others they also
help themselves. Many become hospital volunteers, active members of church
and community groups, or involved in support groups for others coping with cancer.

Anyone touched by cancer
knows treatment can affect relationships other than those within your immediate
family and circle of closest friends. Other relatives, friends and acquaintances
also respond according to their own nature and history. Some are extremely loyal.
Some leave you wondering if they, themselves, are still alive. Most fall somewhere
in between the stalwart supporters and the staunch avoiders.

Let's face it, illnesses
such a cancer may make people uncomfortable. Few of us know exactly what to say
or do when someone we know is stricken by a serious disease Consequently, we may
say insensitive, even stupid things. It is important to remember that when people
say foolish things, they are generally speaking from their own nervousness and
insecurity. Perhaps, if you can talk to them openly about cancer, they will relax
and begin to deal with you in a more caring and supportive manner.

Many people offering assistance
are not just trying to be polite. They are seeking direction. They are asking
for a concrete way to let you know they will not desert you and are grateful
to have something to do to show their continuing friendship. So, why not give
them something to do? If you can give them a specific chore, it takes one thing
off your hands, and you've done them a favor as well.

New friends and relatives
will usually wait for you to indicate how to proceed. This point is particularly
important if you have trouble reaching out to others. Asking for assistance
is really a way of making friends and relatives feel useful and important in
your life.

It is difficult to direct
your energies toward helping other people when yo feel as if you own life is
stressed to the breaking point. Still, if you can provide others with a little
guidance as to the role they can play in your life now, the rewards can be those
of continuing friendships based on mutual concern and support.

Regardless of what you
do to maintain relationships with those in the outside world, people might avoid
you. Lost friendships are a real and heartbreaking threat to those dealing with
a serious illness. There are a variety of reasons why friends and relatives don't
call. Some might find it difficult to cope with temporary changes in your appearance.
Some might not be able to face the possibility of your death or even of their
own mortality. Some may simply not know what to say. And some, despite irrefutable
evidence to the contrary, will steadfastly hold onto the false belief that cancer
is contagious.

An open conversation might
help to dissolve their fears, ease their discomfort and possibly provide them
with a renewed opportunity to participate in a more active form of friendship
and support.

There are no easy answers
or pat solutions to prevent relatives and friends from deserting you. When it
happens, especially during treatment, it is particularly painful. There are others
"out there" and you can develop new friendships with people who will appreciate
you. The mutual support of others with cancer provides many people with comfort
and solace as well as an opportunity to make new friends. As one single man said:

"Of course, I'd
never recommend getting cancer as a way to broaden your social sphere, but I
actually have more friends now than before I got sick. I've met a lot of wonderful
people in support groups with whom I share other interests and activities."

For many, work or school
is an essential part of life. These activities offer satisfaction, a sense of
structure and stability, and an opportunity to interact with peers. When you return
to work or school, you might find your relationships with co-workers or fellow
students may have changed. Many people will be supportive, however, fellow empolyees
and students may try to avoid you. This can be especially true if you continue
to work or attend classes during treatment.

Like so many others, fellow
employees or students don't know what to say and are trying to protect your
feelings or their own. In time, most people will become relaxed in their presence.
If you can remain patient, open and forthright about your condition, you may
be able to clear up many of the misunderstandings co-workers and classmates
have about your illness.

"Work was very
important to me. I wasn't about to give up my job because other people reacted
negatively to my illness and appearance. Things are a lot less tense since I've
shown that I can stay the course. I look better, but the people I work with
also understand more about my illness now, and our interactions are beginning
to be more natural."

If you return to work or school
after your treatment has been completed, chances are you will look well and function
quite normally, and you might find that other tend to underestimate the seriousness
of your condition. Many people take an "it never happened" approach. They may
greet your return with, "Gee, don't you look great? Glad you're back", as if you
were on an extended vacation at a tropical resort. Acutally,there are some who
appreciate a nonchalant attitude toward their illness, but it can be demoralizing
when those at work or school don't even ask how you feel.

When people with cancer
discuss work, they often talk about two major fears. One, they fear losing the
companionship of their fellow employees and two, they fear losing their job.

Some employers are supportive,
but many are not. Outright dismissal is rare, but many companies do practice
subtler forms of on-the-job discriminiation, ranging from demotion or denial
of advancement to forcing a patient to surrender group health insurance in order
to keep his or her job. Sometimes a patient may be gradually forced out of their
job because management decides they have "no future" and quietly eliminates
them from long-term plans. Employers have been known to show patients excessive
consideration, followed by unwarranted reductions in their workload, until they
are finally persuaded to leave for the sake of their health.

The most blatant form of
discrimination occurs when people apply for a new job or entry into school.
Many companies and professional schools and the military routinely reject those
with a history of cancer. Rejection is usually based on the rationale that people
with similar medical histories take too many sick days, are poor insurance risks,
or make co-workers or classmates uncomfortable. While there are numerous studies
showing the absentee and turn-over rates of people with cancer are the same
as other employeees, employers and school administrators remain overly pessimistic
and caustious about accepting survivors.

It is not surprising that
many people try to conceal their illness for fear of losing their job or insurance,
or the reactions of prospective employers or institutions of higher learning.
Most people feel it is usually too difficult, and too stressful, for patients
to hide the fact they are undergoing treatment. Once treatment has been completed,
survivors have different opinions about whether or not to make a full medical
disclosure when apply to a new company or school.

Some agree with sentiments
of this former lymphoma patient, "I've tried it both ways and, at this point,
I'd be afraid to ever tell a potential employer. I haven't told the company
I work for now, and I don't intend to."

Others feel just the opposite.
As one woman said, "For me, telling was easier than hiding information. I got
everything out in the open right away. Then I didn't have to worry about a previous
employer or reference inadvertantly letting something slip, or whether a physical
examination would be required, or how I would approach my boss if I ever had
a relapse."

There are no easy answers
to the questions of whether, when and how much information to divulge
about your illness. Disclosure is an individual issue, but you should be aware
that "lying" or omitting information on an application or during an interview
can have ramifications, one of which might be immediate dismissal. It is therefore
adviseable to get the advise of a professional employment counselor as well
as a laywer before you decide what approach to take toward this issue. This
is discussed in the Americans with Disabilities Act.

Medical insurance is a
special concern of those with cancer, and many people have difficulty obtaining
adequate coverage due to their past or present condition. People with life-threatening
illnesses are classified as high risks, and a private major medical policy handling
this category can be extremely expensive and limited in coverage.

Employees covered under
a group policy carried by their employer may have trouble qualifying for a new
group policy if they change their job, unless a new employer does not require
listing a medical history. Most insurance companies, will allow employees who
are leaving to convert their group plan to a private plan. This typically is
at much higher cost and with limited coverage. The federal (USA) policy of COBRA
also allows 18 months of insurance policy after leaving (or being terminated)
at a job.

Even people with adequate
insurance for most illnesses may find a substantial portion of the expenses
incurred during treatment for cancer are not covered by many major medical policies.
The high cost of health care, combined with limited coverage, often makes it
necessary for patients to purchase additional insurance.

As a special note, parents
of teenagers or young adults with cancer might wish to begin exploring alternate
forms of coverage before they reach the age when they are no longer covered
by a family or school policy.

Treatment for cancer has
improved dramatically over the last two decades. Many people go into remission.
Many become long-term survivors, the majority of whom are considered cured after
five years without evidence of disease since the cessation of therapy. Research
continues, offering the promise of even better treatment methods, fewer complications
and increased survival rates. So while no one can guarantee your future, there
is a real cause for hope.

While survival percentages
and averages are important, it is even more important to recognize the individuality
of each case. Each of us has our own genes, our own immune system, our own urge
to fight, and our own will to live. These are characteristics which surpass
analysis. There are many people living disease-free today, who, according to
the charts and statistics, should not be alive at all. Year after year, they
continue to defy poor prognoses and negative statistics.

Even if the outlook for
recovery becomes particularly guarded, there may be a new treatment and another
remission . . . and those intangible gifts life unconditionally bestows upon
us all. There are still experiences to be shared, more sunrises and sunsets,
more good days and easy nights.

"As I was getting
into my car the other day, I was thinking about how much my life had changed
over the last couple of years. Two years ago, I was in the middle of treatment
for cancer, and I felt so scik I really thought I was going to die. Now I have
so much to look forward to. I'll finally be graduating from medication school
soon. My wife and I are expecting our first baby. Then I suddenly thought, 'Oh
God: What if it comes back?' I really got scared for a minute. So, I had to
tell myself again, 'Maybe it will. But it's not here now. Just start the car.
And be grateful for this day.' It has been almost two years since my last treatment,
but that kind of thing still happens alot to me."

No one ever forgets that they,
or someone they love, once had cancer. Treatment ends, but anxiety can linger.

"I had beaten
leukemia. I was totally estatic," said one man describing his last chemotherapy
session, "for about a day and a half." "Then", he continued, "I began to think
that maybe treatment wasn't really so bad. I mean at least I was constantly
monitored. How would I know if my bone marrow was secretly starting to go haywire
again? Of course, I couldn't know. I still don't know but, as time passes, I
wonder less and less about it."

Initially, a cold or the flu
-- even a bad cramp -- can cause panic. Another patient said:

"For the first
time or so after treatment, I kept running back to my doctor every time I got
a cold, begging for a bone marrow aspiration. I hate bone marrow tests, and
if you've ever had one, you know its not something you beg to have done. But,
I would get a little crazy because I wsas so afraid my leukemia had returned.
Thankfully, my doctor never complied with my wishes, but instead sent me home
with instructions to take aspirin and drink plenty of fluids."

Follow-up appointments, such
as a six-month or annual checkups, might also be times when fear and anxiety overshadow
hope and joy. Many find it upsetting to return to their physician's office or
treatment center -- places filled with reminders of the most frightening aspects
of illness -- and some people actually experience physical symptoms similar to
those experienced during treatment. These reactions are usually milder in nature,
however, and generally pass quickly.

Even the approach of those
magical five and ten-year milestones might make you feel more anxious than secure.
There will be other times, too. Moments -- unrequested and unwelcomed -- when
you will suddenly remember and, once again, feel as if your whole life is hanging
by a single thread. These are feelings known to everyone who has been touched
by cancer, but moments of fear and anxiety grow further and further apart as
you continue to focus on thoughts and activities other than those involving
your illness. Time does help!

People who fight a life-or-death
battle with cancer share an underlying insecurity about the actual state of their
health, but many also share a kind of inner happiness and peace experienced by
few others. Survivors often develop the rare capacity to plan for the future,
and at the same time, appreciate and enjoy the millions of ordinary moments most
people ignore. Cancer may have stolen your childlike belief that this life will
go on forever, but through your struggle for survival, you may have gained something
in return -- something which cannot be taken away -- the unique ability to see
the special moments of each day. This passage was adopted by
E. Loren Buhle, Jr. Ph.D. from a variety of sources, including non-copyrighted
documents from the Leukemia Society of America and numerous other sources.